Monday is World Duchenne Awareness Day 2015. It’s on the 7th of September, 7/9 in recognition of the 79 exons on the Dystrophin gene. A tiny mutation in just one of these exons is all it takes to cause Duchenne.
Duchenne is the largest genetic killer of children but most people, STILL have never heard of it. We were the same until November 2012 when Archie, George and Isaac were all given the diagnosis on the same day.
We would ask you to think about changing your profile picture to the red balloon we have here to show your support for ALL those living with #Duchenne . We want to see all social media sites flooded with red balloons. We have waited until today to ask you because we know how busy you all are and also because you have so much to think of, perhaps if we ask now you might even do it today in preparation!
Those of us in Roscommon will be meeting in Loughnaneane Park, in the Town from 6.15 for a short Balloon releasing ceremony at 6.30pm. This is to show our support and solidarity for every Duchenne Warrior; past, present and future. We would be so GRATEFUL if yu were able to spare 30 minutes of your week to join us. Last year the children really enjoyed themselves and it was wonderful to see so many people take the time to support the Duchenne Community.
If you are not in Roscommon but wish to show your support, it would be wonderful if you were able to take an image of you releasing a RED Balloon and post an image to:
https://www.facebook.com/worldduchenneawarenessday?fref=ts
saying where you are in the World!! It would mean so much to the Global Duchenne Community. Also the Hastag for the day is #WDAD15
So much is happening in the research world but time remains against every person living with DMD. Together we can make such a massive difference.
#TogetherWeAreStronger
#WDAD15
Love & Thanks
The Join Our Boys Team, especially Archie, George & Isaac
XXX